Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

9.07.2009

Back Home, Big News, Hallucinations & Hot Docs

A big hello to everyone. And a big thank you to those of you who tracked me via my mother's posts on Facebook.

You may be thinking I've abandoned Neuro Detour. I haven't. In fact, I'm ready to expand it's content. (More on this later.)

I haven't written in more than 1 month because I haven't been home for 5 weeks. A few days after my last post, I had my 2nd relapse in 1 month - head to toe pain...as though a semi truck was driving back and forth over my entire body and delirium (although I thought I was perfectly lucid) as well. Note: Don't try this at home.

FIRST...BIG BAD NEWSOn July 28, one day before my birthday and one week after my first relapse, I was officially diagnosed with multiple sclerosis (MS). While I knew that people with transverse myelitis (TM) have a 50% chance of developing this, I assumed if it would happen, it would take years.

At least, I don't have to worry about getting MS anymore.

NOW, BACK TO THE STORYOn Tuesday, August 3, I went to the ER by ambulance, my mother flew in immediately, and I honestly have no clue what happened between then and my first full hospitalized week. I was released Friday, August 21, but with conditions. I had to go back to Pittsburgh with my mother for 2 weeks of R&R.

Initially, the idea of this was more torture than comfort. I had just started seeing someone (yay!) and I was concerned that the extended absence would cause him to think "is this worth it?", "do I really want to date a neuro gimp", "she's hot and all, but there other hot chicks who aren't sick", and the list of self-degrading scenarios goes on.

But my real objection was that this was tangible proof that, at least for that time period, I was considered incapable of caring for myself, i.e., the dreaded burden of dependency.

I wanted to get out of that hospital and return to life as normal; 21/2 weeks of my extended birthday month were already murdered by this relapse.

MEMORIES...Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 1995.

I have no idea why this is the year I returned to. My 1995 was as uneventful as any college sophomore. But there I was, staring into the blue eyes of my nurse, neurologist, and infectious disease doc, while my mother sat and watched them taking every effort to keep me from getting a stroke.

All that I recall from 8.3-8.21 is: 3 surgeries2 days of plasmapharesissepsisa crackhead stroke victim roommate who screamed "waaaaaaaa......ter" over and over again,inability to stand or walk for a couple of days (hello bedpan!)get well cardsmy favorite roommate, Preciousthe uncompromising painabout 1/3 of my visitors (thank you!)the preferred moniker switch from TM to MSmy mother flying and driving back and forth from Pittsburgh to Philadelphiathere are now nodules in my lungs (who knows what that means)ANDthe should-have-expected last day of hospitalization yearning to get the hell out of there but you-must-wait-to-be-released-and-receive-your-release-papers 4-hour wait

ON THE ROAD AGAIN...When the 2-week R&R Pittsburgh sentence ended, I had mixed feelings about leaving. While my mother's stairs are a real bitch for a weak gimp like me, as they became less difficult to maneuver, they were actually a solid measure of my gradual improvement. But aside from a few flights of stairs, I experienced all the good that my hometown had to offer - most of it from the vantage point of my mother's 2nd floor balcony.

In Philly, I have a handful of great friends. In Pittsburgh, I have a history; I made my mark there through my dance company and arts outreach work; my brother, sister-in-law and my joyous nieces live there, as do many friends and relatives, including my resilient grandmother and my BFF/virtual doctor who I've known for my 34 years on this earth.

But Pittsburgh, with its hills and distinct neighborhoods, is not gimp-friendly. Philly is. (Though it should be better.)

So here I am. And here I'll stay, 6 blocks from my doctors and hospital - a distance I can walk on my best days.

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.